Living is a hard habit to break

I have a client in community care with whom I spend 15h weekly (10+5h shifts). He has a terminal disease and relies on a bipap machine for respiratory life support 24/7. He recently expressed to me that he has set a timeframe for unplugging his machine. This involves palliative sedation under his physician's care (in his home), and disconnecting the bipap air delivery.

He has said that his date will be greater than 3 weeks from now and no more than 6; no firm date has been chosen, and he is grappling with that.

I am providing nursing care in his home for 10 hours straight, 1-on-1, and he has explained that he is not ready to die.
I find this situation a little different from my other EOL experiences because I usually nurse people who don't have a decision to make about their time of death.

As a nurse, alone in a room for hours with a slowly dying man , who is still wrestling with this decision, I want to be able to provide the best support possible without influencing his thoughts. This is increasingly difficult as he explores all the toughest issues of his life while trying to prepare. Still, I try to be a sounding board because this is his lived experience and I respect that.

My question to other nurses is, when you find yourself in a counseling situation (whether EOL-related or not) how well do you feel you manage?

Poll: Have your last words (or actions) to a patient ever haunted you?

I didn't vote because I have never cared for EOL patients. But I do work in Psych and have to help people work through difficult thought processes. Really the best skill you can utilize is active listening...of which one tactic is to use reflection, in other words repeating what you hear back to the patient. Sometimes when clients hear their own thoughts from another person, it helps them make decisions. Other than that, empathy is probably your best tool.

Hope you will follow up, this is a challenging situation and would be interesting to hear your experience.

Jun 26, '17

Joined: Jun '10; Posts: 10,079; Likes: 41,306

Interesting thread, anitalaff!

I, too did not vote, although I've been in a few EOL experiences but have never had any last words to a patient haunt me.

And I agree with oceanblue on the active listening technique.

Jun 26, '17

Joined: Jul '16; Posts: 106; Likes: 131

Thank you, I will follow up. You're absolutely right about reflection being my main tool. I need to make a point of being conscious about using it.

Jun 26, '17

Joined: Jul '16; Posts: 106; Likes: 131

Thanks again. I'm finding it helpful to hear feedback from other nurses.

Jun 26, '17

Joined: Dec '07; Posts: 508; Likes: 1,375

I did not vote either, because my view of end of life care is a bit different. What I can say, is bless you for being available and nonjudgmental with this man in the time when he most needs support and not coercion. This isn't an easy position to be in as a nurse, but the fact that you are there for him with kindness and acceptance is huge. If I were in this man's position, I would very much appreciate having a caregiver like you.

Jun 26, '17

Joined: Jul '16; Posts: 106; Likes: 131

Thank you. I am still terrified that I will say the wrong thing along the way. I really appreciate your support. We all come from different places when it comes to the end of our lives, and ultimately, we all have to go there alone. I just want everything leading up to that moment to be good.

Jun 28, '17

Joined: Jul '16; Posts: 106; Likes: 131

Update. Maybe I'm losing it.
My client said goodbye for the last time to friends who came over to visit this afternoon. This is the first of many emotional days yet to come as news gets out that he is setting a date for turning off life support. I hate that this decision is largely a financial one. This is creeping into my personal life.
I got a bit of flak from my veterinarian about not running endless tests and doing everything possible for my 18yr old dog with failing kidneys. I was offended and angry for hours afterward. I realized that this wasn't about the vet and the dog- it was about my client feeling pressure to shut down his life support because he can't afford his care anymore.

Update. Maybe I'm losing it.
My client said goodbye for the last time to friends who came over to visit this afternoon. This is the first of many emotional days yet to come as news gets out that he is setting a date for turning off life support. I hate that this decision is largely a financial one. This is creeping into my personal life.
I got a bit of flak from my veterinarian about not running endless tests and doing everything possible for my 18yr old dog with failing kidneys. I was offended and angry for hours afterward. I realized that this wasn't about the vet and the dog- it was about my client feeling pressure to shut down his life support because he can't afford his care anymore.

{{{{ hugs }}}}

You are in the tough stuff. The deep end of nursing with a complicated EOL case and a pup that has lived a long life that is in his twilight.

Bless you.

Dec 7, '17

Joined: Jul '16; Posts: 106; Likes: 131

AN update on this client:
As he was setting a third proposed date for his EOL, he developed an intractable bowel complication that was unrelieved by his prescribed pain meds. After an excruciating week, he was put on a PCA pump with hydromorph. At that time, he set his final day. He spent several days receiving visitors, saying goodbye to friends and family. Had this painful complication not ocurred, I believe he would have continued to be very conflicted about ending his life- he still had projects to finish. On his last day he was attended by his palliative physican and a colleague, an RN, and myself (another RN), close friends and family. It was a very large room, full of love and grief.
In the end, the cost of his care did not cause him to choose his final day. However, it caused him much grief and stress during his last few months, worrying about having to die because he was running out of money. I want to continue my education so that I can investigate how situations like his develop and what we can do to change that.